Friday, February 4, 2011

We went to the sleep doctor for the first time last week.. We have just been going through the ENT to do all the sleep studies..and come to find out I guess we were kind of going about it in the wrong adult way. oh well I was just glad that we finally got to go and met this doctor..Its kind of funny but he actually said the same thing..that it was really good to finally meet Miss Avery..that he has been reading the studies on. So we spent around two and half hours there..Let me just say that EVERYONE in that office truly loves there job and for once it was so nice to really see..the dr and the nurses were AWESOME!! We call and check in with nurse every week. She wants us to..to see how she is doing..and we also have a home respiratory therapist that checks in with us. So while we were there we fitted her for a mask that actually fits her..Did you know that there are about 40 different kids masks that they can pick from.. This is the one that we ended up with…
Isn't it lovely??? The doctor went over all of her sleep studies and told us that she did improve a little bit when she had this last sleep study with the CPAP machine. Not a lot maybe 40% which means she didn’t have as many episodes as she did with out the machine. Remember I told you we only got the machine up to a five, so we are going to start off at a four then in a couple of months when she is used to the machine go back for another study with the RIGHT mask and try to see if we can increase that more. BC even though we did see a little bit of a good change its not 100% and the dr isn't happy with that until we have seen a 100% change. Here is a little education on the CPAP machine. The machine acts like a vacuum cleaner..it blows air at a pressure that is able to hold the airway open while they sleep. The pressures that are used are the naturally pressures that are in our airways during the day when it is open. CPAP machines do not give Avery extra oxygen, they are just blowing the air that is around us all the time. This is the machine that we will be using….
Don’t you just love how the machine says “Welcome”..HA! Thanks machine I need to be welcomed every time just to be reminded! It has a heated humidifier on it. A lot of air with low moisture can dry out and irritate your airway. Not only are dry air passages uncomfortable, but the swelling they cause can actually narrow your airway affecting pressure requirements. Humidifiers add moisture to the air from the CPAP machine. There are two kinds of humidifiers: cool passover and heated. The cool passover humidifier passes room temperature water over room temperature air. The heated humidifier heats the air to ensure to can hold enough moisture to maintain a comfortable airway. The machine also has a modem on the back of it that it automatically sends all the information from the last night to the doctor and the therapist so they can review it and now I guess if she kept it on all night. Jared was a little bummed out about this. Why??? bc he wanted to try the machine out and see if it helped him out..We swear he has sleep apnea too..HA! At least I do bc I'm the one that lays awake half the night listening to him.
Now to answer some of your questions bc I'm just now finding out the answers myself: Avery has Obstructive Sleep Apnea. It is where the upper airways collapses resulting in decreased or no air getting to the lungs. Muscles in the neck and throat are responsible for maintaining the structure and tone of the upper airway. During sleep these muscles relax and during REM sleep (dream sleep) they become even more relaxed. Obstructive sleep apnea causes disruptions in breathing that can cause Avery’s oxygen (the good gas that your lungs take in) to drop or their carbon dioxide (the bad gas that your lungs expel) to rise. In addition, the collapsed airway is reopened by either a brief arousal from sleep or a full awakening. These disruptions in sleep can occur quite frequently during the night and keep them from getting a good nights sleep, so they are sleep deprived the following day.
Can we just not treat it?? No if left untreated many problems can occur. Like behavioral, high blood pressure, heart burn, poor school performance, and over long periods of time the increase of stroke, heart attacks, pulmonary hypertension and heart failure significantly.
Can she outgrow it?? Yes, she could very possibly out grow it later on down the road..we will just keep a close eye on it and if we believe that she is then we just have a repeat sleep study done to find out.
So on Avery’s second study after she has had her tonsils and adenoids out she was averaging about 15 episodes an hour where her oxygen levels dropped. Which puts her at the severe level and Mild-moderate for central sleep apnea. Now this last study that we had with the CPAP machine she went down to 9 episodes and hour. How they even got anything recorded from this last study is beyond me..bc boy like I said before I don’t think we got any sleep but apparently Avery did according to the study!
We left the office very educated and encouraged that this could possibly really work! So for the last week we have been desensitizing Avery to her mask. She wears it for about 5-10 minutes before bed.Then last night we put the mask on hooked up to the machine for 15 minutes while she tried to fall asleep. HAHA!! That didn’t really work really well..but I kind of went into knowing that it wasn’t going to go over very well..so it helped me really stay calm and focused. She tried to take it off repeatedly. We tried to put the extra mask on her pig and we tried to lay down with her and read a book but she did not want to lay down at all with that mask on!!! She sat up and resisted us if we did try to make her lay down..so for the first night I thought it probably wasn’t all that important that she laid down..maybe tonight. Now tonight we will add 15 minutes and continue to do so until she is wearing it all night and if she falls asleep with it on then we will leave it on. Our goal is hoping for 2 hours each night for the next two weeks and then increasing from that point until she is wearing it every night for the entire night.

31 for 21

I am a stay at home mom to five girls. Yes, you read that right.. I said 5 girls,{no boys} and one of them who just so happens to have some designer genes {down syndrome} BUT it does not define who she is:)!! Life can be pretty interesting at our house.:) In my free time I like to sew, take pictures, cook and craft...This is our family blog that consists of our family stories, happenings, pictures, issues that come along with raising a child with Down syndrome and many of my creations that i do in my free time. We are a midwestern family living in the south. I started this blog to keep our family and friends that are still in SD updated on our family.